We'll share stories about using the conference's Wellness Room to manage the fallout from the heightened excitement, adrenaline and information overload experienced by ePatients in particular, and all attendees in general. We'll touch on the emotions that can arise from the types of pressures ePatients confront at events like these, and, if you've never heard the term "Spoonie" you'll learn all about it.

Then we'll zoom in and discuss Self-Care—the often underestimated and misunderstood tool available to anyone seeking to gain a measure of empowerment over stress, burnout and fatigue (including the Compassion Fatigue so prevalent in healthcare).

**MedX Live is a live Google Hangout and simultaneous tweetchat from Stanford Medicine X. Join us this Tuesday, 1/21/2014 from 5:30-6:30 pm. Watch the broadcast here and make sure to use and follow the #MedX hashtag on Twitter where Nick Dawson will be fielding your questions.

Food For Thought:

1. In this short video from Medicine X's "The Buzz With Hayley" series, Emily Bradley discusses the Wellness Room and the challenges a conference attendee with active disease symptoms might face:

The next morning, after opening remarks, I spent the first session in the Wellness Room. I didn’t want to. So far I had only used the Wellness Room during breaks. But I was really hurting, and knew that continuing to push myself would lead to even more pain, and keep me from really benefiting from the sessions I did attend. So, I planted myself on a lounger in the Wellness Room, turned on the MedX live feed on my laptop, plugged in my headphones and heating pad, and closed my eyes. That was a tough decision to make, but I probably got more out of that session via the live feed than I could have if I’d stayed in the room and watched it live, and it meant I was in better shape for the rest of the day. (emphasis mine)

6. Interesting excerpt from a piece by Norman Rosenthal M.D., in the Huffington Post about Meditation and Productivity in Business—in this context the author is recommending Meditation as a tool for self-care:

We're not designed to live on adrenaline

Psychologists have documented variability in alertness and mental acuity across the day. Our personal experience confirms this. We dash for that extra espresso drink or diet soda so as to keep going, or settle our nerves down with a beer or cocktail at the end of the day. Aside from using these exogenous chemicals to regulate our state of mind, when stressed we release endogenous brain neurotransmitters, such as norepinephrine and dopamine, to help keep us sharp.

But these chemical systems have developed through the course of evolution for short-term crises and challenges, not as part of an ongoing lifestyle. We are not geared to "live on adrenaline." In fact, the biggest cause of long-term sick leave, work stress, has been called the "The Black Death of the 21st Century." (emphasis mine)

Monday, December 9, 2013

If you are an ePatient—engaged and active both IRL ("in real life") and online in your journey through healthcare, empowered and advocating for yourself and others, striving to educate yourself and others about your condition, and excited about innovation at the intersection of medicine and technology—you need to be at Stanford Medicine X 2014.

If you want to be involved, whether you've been considering dipping your toes in advocacy or are already a full-fledged ePatient community leader, if you have been mentoring other patients, if you have been blogging about your condition or have written a bestseller, if you are looking to meet and collaborate with like-minded seekers, doers, makers and strivers all working to make healthcare better from the inside out, if you are itching to connect with ALL stakeholders from physicians and researchers to designers, Silicon Valley execs, tech gurus and beyond, then you need to be at Stanford Medicine X 2014.

"It's still in its prototype stages, existing mainly in video and concept form, but once it’s fully realized, the MindBrowser could be a powerful tool in combatting stigma and ignorance. Haagen has plans to apply the MindBrowser format to all existing mental illnesses."

I am a fan of the "out-of-the-box," curiosity/research-driven and collaborative approach... and, it's always so inspiring when a patient takes on the task of shifting the needle in creative and effective ways. Haagen tells Co.Design about the roots of her project:

“Throughout my life I have had different kinds of experiences with depression,” Haagen tells Co.Design. Out of a personal need to speak openly about the illness, she began to interview depression sufferers and psychologists about their experiences.

Also, I can't help but imagine how extending and building on this approach might work/help if it were to add further participatory components and even evolve into an app/tool that individual patients, psychologists, doctors and caregivers might use.

"(...) the (DOME) project produced insights that should guide future efforts. One is simply encouraging medical professionals and designers to interact.Doing so gives practitioners a chance to see their old equipment "with fresh eyes," says West, and yet such collaborations are rare--despite fruitful partnerships going back to the days of Jeffrey Cooper. "I speak at a lot of medical conferences, and they never even considered that a designer could be involved in this sort of thing," says West. They should, stat." [Emphasis and link placement are mine.]

At least one medical conference embraces the design/medicine collaboration -- Stanford Medicine X (disclosure: I sit on its ePatient Advisory Board). Here's to seeing this rippling out further.

Wednesday, October 30, 2013

Today's homework became a journey through the treacherous landscape of trial and error (error after error after error!). It ignited my love of a challenge, tested my patience, called on my tenacity, and after many grumblings and crumplings, eventually yielded success.

Crumply Crumplings And Crane.

Success, Basic: I finally managed to transform the square piece of paper into something resembling an Origami crane.

Success, Advanced: I was reminded about the process of learning, and learning how best to learn. I ended up having to use a combination of two separate online Origami resources, a wiki, and a tutorial to actually understand how and where to fold the paper at certain tricky junctures. I kept getting stuck at a certain point with the wiki -- that's where the pile of crumplings happened. After a while, I zoomed out and tried instructions from a different site. Luckily the tutorial provided the key I was missing. Yes, you need to carefully fold the paper... AND you need to go over each fold several times with a ruler to make it super-duper-uber crisp. Otherwise, the paper doesn't respond and you are left with a mess.

Finding that key is so gratifying. I love that moment when precisely at the point where you were so terribly stuck, you now flow through like a river to the sea. In that little moment, at that turning point, larger horizons appear, hope is renewed and optimism soars.

*

* *

Feeding At The Trough Of Nature

Then came the photo shoot. Where was I going to put this bird? And this bird is supposed to represent ME? Ok, fun.

I went outside and ended up "Feeding At The Trough Of Nature."

Is this me? Is this not me? Meh. I don't particularly care one way or the other. I'm an overthinker by nature and I am using this course to work on doing the exact opposite.

Lastly, the references. References, research, discovery and exploration -- yum yum for the brain! With the addition of the secret sauce Community factor which for me is working mostly via Twitter (as of now, the iversity discussion platform is unfortunately terribly inadequate and cumbersome).

Tuesday, October 29, 2013

I approached the task by making a decision about what I consider to be "a good picture" of me.

There is already a good picture of me out out there online: it's a professional portrait taken by a fantastic photographer.

A. No need to reinvent the wheel, and B. I was simply not inspired by the notion of having this assignment be about the most common meaning assigned to the term "a good portrait."

I'm taking #Design1o1 to deliberately explore the world with a different approach from my same-old same-old. With this exercise, I wanted to learn and convey something about myself and have fun while doing so.

I enjoyed the dual aspect of the assignment. It was with less trepidation than I would have had a few years ago that I gave up control of the shot my friend would take after I explained the assignment to him.

Maybe I cheated by taking my selfie first. But what it allowed me to do was immediately communicate to him the mood and goal I was aiming for. I then left it up to him. In addition, removing the constraint of the "good portrait" freed me from self-consciousness, vanity, and all that annoying drama we are so good at putting ourselves through.

Here is the picture taken by my friend (it includes another friend -- one with four legs); it was a true collaboration:

Here is the selfie:

I played with both pictures to add another layer to the assignment, or maybe rather, as a comment on it.... the kaleidoscope effect and the many facets of ourselves, including those we inherently have and those which represent us and the infinite ways we might be perceived and by whom.....

A scroll through the introductions on the course's home page yields hellos from a truly global bunch of enthusiastic participants. I saw all continents represented with people hailing from Nepal, Namibia and everything in between.

And..... I am still trying to process the fact that approximately 27 000,

yes that is

T W E N T Y S E V E N T H O U S A N D

people have enrolled.

Deep. Breaths! I am relieved I am not one of the organizers -- I get to do the fun/work without having to worry about infrastructure, functionality, or grumpy participants. I'm also curious to see how many students stick with it all the way -- myself included. It's reassuring to me that the organizers have given some thought to human behavior and warned us from the get go to be aware of time management:

This admonition comes with a reference to something I had never heard of: the Quipu, the ancient Inca necklace-and-knots accounting system. I love discovery!

Which brings me to one of the things I am already enjoying about this course: its reference cornucopia, including its very own "Encyclopedia:"

Another discovery I made: the quiz asked how Sid Vicious ended his performance of My Way at the Olympia in Paris -- something I had never seen:

Knowing Paris like I do, that juxtaposition (whether it actually happened or not) of bourgeois culture and ultimate Punk is fun to behold.

If anything, this course is a social experiment in design, as much as it is a course about design, and it's already generated a slew of interactions -- instructor, Stefano Mirti has expressed the wish that above all, this MOOC is creating a community -- including this great stream launched by srinivasan reghuraman:

Friday, October 25, 2013

I just signed up for my first MOOC, aka Massive Open Online Course. I found it listed here, along with this screenshot which explains what a MOOC actually is.

I've worked in Design for years but have never taken a design course. I'm also obsessed with Innovation and there's nothing quite as thrilling as daring oneself to go on an adventure and try something new. Beginner's Mind is not necessarily an easy or comfortable place to live... but who said life was supposed to be comfortable??

Adventures are thrilling because they test our fears and our willingness to move out of our comfort zones. They are also thrilling because there's nothing like that adrenaline rush of accomplishment once we've done so and find ourselves still breathing.

After reading about the course, its founder, Stefano Mirti, and viewing its fantastic introductory video, I enrolled today (it starts on Monday October 28th) and so my adventure begins. I can't wait to get started.

Luckily, this team seems to mean serious business and is offering a series of preparatory exercises. I dared myself to complete one today.